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#MEAction - UK Organiser

Discussion in 'General Advocacy Discussions' started by RuthT, May 23, 2018.

  1. RuthT

    RuthT Senior Member (Voting Rights)

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    #ME Action Network have just announced a fundraiser for a U.K. organiser.

    “to support another year of mass awareness, medical and scientific outreach, advocacy, and community for impact like #MillionsMissing and our parliamentary actions”

    Edit: Link will be added when can work out how to do so. I have tried, but it disappears.

    If anyone more familiar with adding links into this website who has received the email & can add the link so it is visible & works would be great.

    Link given in post further down this thread added by moderator:
    https://www.meaction.net/grow-our-uk-team/
     
    Last edited by a moderator: Jun 9, 2018
    JaimeS, Skycloud, ahimsa and 7 others like this.
  2. Adrian

    Adrian Administrator

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  3. RuthT

    RuthT Senior Member (Voting Rights)

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  4. Trish

    Trish Moderator Staff Member

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    It would be great to have someone working full time on this for a year. I hope, if it does happen, they will work closely with the other ME organisations, particularly the MEA who have local knowledge and contacts.

    I find it a little strange that the fundraising to employ someone in the UK is based in California and in dollars.
    This means that donations from UK donors will have money transfer fees deducted, both when they donate, and when the money comes back to the UK to pay the salary, and the charity can't claim the 25% extra from the government if the donor is a UK taxpayer.
     
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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    In order for a charity to claim the 25% back from the government, I think it has to be a UK-based charity. #MEAction is US-based, AFAIK, and would have had to set up a charity here in the UK to be able to have GiftAid. Maybe they might do that in future but need a bit of a beachhead first.
     
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  6. chicaguapa

    chicaguapa Established Member (Voting Rights)

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    They have to fundraise through the US-registered charity. It's not registered as a charity in the UK yet so donations wouldn't qualify for gift aid, though I'm sure I saw something that said you could claim the tax back yourself on any donations. You donate through PayPal in $ so no currency fees are deducted.

    The blurb on the fundraising page details exactly what the person would do, including collaborating with the other UK ME charities.

    A lot of the details have been discussed with the UK volunteers so we have all had a say and will continue to be involved. I think it's exciting and I hope we can raise the money quickly so we can get someone to make a start asap. One of things I've observed is how things are done differently in the US and MEAction are very mindful of that. So it will be great to have someone UK-based to really focus on the issues we have here in the UK and tackle them, alongside the other charities.
     
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  7. Trish

    Trish Moderator Staff Member

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  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    To be honest, as a bitter old cynic I'd rather uk me action worked more independently as the other charities imo can have a dampening effect and simply aren't as outspoken, radical in vision, on some issues, as many of us want. Example last year when AFME attended the MM event and told the press we needed more research funding but couldn't have it as there wasn't enough awareness, if that was a true quote it was very different to the more from the state demands of USA MEaction at least. And the quite cold shoulder most uk charity have for direct campaigning or plainly criticising/taking on the estsblishment on areas like research funds, eg at CMRC meeting when MRC completely got away with being blaming patients for the lack of interest and no other reason was put forward, except MERUK saying their researchers were not harassed.

    I get that it pays to collaborate on some issues but I'd like us to move forward at speed in uk, and the same speed pushed For in USA, not with a pedestrian twenty year time frame to add to the thirty years gone already.
     
  9. JenB

    JenB Senior Member (Voting Rights)

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    Yes, we have to be a registered UK charity in order to fundraise in pounds via platforms like GoFundMe or JustGiving. I do think we'll get there eventually, but there's a lot more we'd need to put in place before doing that, and this staff person will help. And yes, absolutely re: beachhead. We wouldn't even have the capacity at this point to fill out all the necessary paperwork to incorporate a charity, let alone manage a board of trustees.

    Donations to the Time for Unrest campaign were eligible for gift aid via our fiscal sponsor, Doc Society. We actively promoted that option and displayed it on our website, and received £1125 from two donors. For whatever reason, it wasn't a huge inducement. People can still donate this way and it will support medical education/outreach related to the film: https://www.unrest.film/donate
     
    Last edited: May 23, 2018
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  10. PeeWee

    PeeWee Established Member

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  11. JenB

    JenB Senior Member (Voting Rights)

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    If someone would like to raise funds on our behalf, that would be great! However, I don't think we could promote a fundraiser of this magnitude that was going into a private account. Inevitably, we'd probably need to transfer it to our US bank account, anyway. In other words, we need legal custody of the funds in order to be able to then disburse them.

    This should not (I hope) be a huge impediment to folks. I know it must feel strange, but we've spent lots of dollars in the UK to date, contributed by both private individuals and American foundations. Yes, there are transactions costs which we had to eat, but they were trivial relative to the impact of the work and at the end of the day, it would have cost vastly more to incorporate locally. In other words, in the short-run it is much more expensive in £'s/$'s of direct costs + human time to set all that up than the transaction costs of transferring funds internationally. In the long-run, we want to incorporate locally, but need this hire in place to start to build the capacity to do so.

    When folks donated to the Kickstarter campaigns, was everything displayed in £ or was it also dollars? It didn't seem at all to be an issue then. I also imagine a lot of folks who donated to Berkeley to support David's work on the PACE Trial were also donating in dollars but were based in the UK (?)

    The most important thing is to raise the money so we can hire this person and get to work!
     
    Last edited: May 23, 2018
  12. Trish

    Trish Moderator Staff Member

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    Thanks, @JenB, I agree it would not be right for a private individual to collect funds in the UK for this appeal. And thank you for all the work you are doing to try to make this happen.
     
  13. JenB

    JenB Senior Member (Voting Rights)

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    Thank you!!! Fingers crossed!
     
  14. RuthT

    RuthT Senior Member (Voting Rights)

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  15. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I notice the U.K crowdrise is going pretty slow....maybe I'm just impatient but with all the stellar work M.E. Action are doing I'd love to see them getting better financial support...I know people can only give what they can....the global one is slow as well which is disappointing.
     
  16. Trish

    Trish Moderator Staff Member

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    I'm not really surprised the funding is coming in slowly. It's not a reflection on the quality of MEAction's work, I think. Probably more a reflection of the limited funds most of us have and the number of different calls on our funds.

    In the last couple of years I've given to at least 3 different appeals for research funding and twice to David Tuller's crowdfunding, all of which I was glad to be able to donate to. I suspect most of us are the same - we give what we can when we can.
     
  17. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I know Trish, what I wonder at is if there are so many of us...if each gave a small amount, it wouldn't be long adding up. I just want to win the lotto!!!
     
  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I’m lucky - I got to my 50s before ME stopped me working and I will be getting a pension. I give to everything (sensible and biomedical) going but I’m learning about the benefits system and it’s clear that anyone reliant on benefits simply doesn’t have the luxury of being able to stump up £5 for David Tuller then very soon after another £5 for MEAction. It is shocking and incumbent on those of us who do have some disposable income to step up. I will be doing more stepping up soon.
     
  19. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Likewise @NelliePledge....we all have to do what we can...I am ok financially at least for now as husband working. As I buy no clothes for myself and go nowhere really, my gift to myself is donating when I can.
     
  20. Tia

    Tia Established Member (Voting Rights)

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    It does seem to be going slowly which is a shame. I agree - a reflection of lack of funds rather than lack of support I think. I've donated what I can and feel pleased to have been able to do so (just a small amount but it all adds up!)
     

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